Below is a copy of the press release from APFED regarding the new medical codes for EGIDs. This is great news and a very big step forward. Prior to this we had no idea how many people suffered from this disease, ages, etc. It was not tracked properly because there was no coding. Now we can begin to collect this information and use it to help make the changes needed. We're so happy, yet there is still so much to do.
American Partnership for Eosinophilic Disorders
3419 Whispering Way Drive
Richmond, TX 77469
http://www.apfed.org/
For Immediate Release
Contact: Beth Mays, APFED President, 713-498-8216, beth@apfed.org
APFED Announces Approval of ICD9 codes for Eosinophilic Gastrointestinal Disorders
(July 15, 2008) APFED announced today that ICD-9-CM codes have been approved for
Eosinophilic Gastrointestinal Disorders, EGID, by the National Counsel for Health Statistics, NCHS. APFED submitted its proposal to the NCHS in September 2007 for four diseases: eosinophilic esophagitis, gastritis, gastroenteritis and colitis, all types of EGIDs. Thousands of patients suffer from these debilitating disorders; however until now they could not be coded correctly, making it difficult for medical professionals or researchers to determine how large a percentage of the population had these disorders.
The ICD-9-CM coding system is an international classification system which groups related diseases and procedures for the purpose of reporting statistical information. ICD- 9-CM codes provide a uniform language, and thereby serve as an effective means for reliable nationwide communication among physicians, patients, and third parties (QCMetrix.com). ICD-9-CM codes are necessary for billing, insurance and medical records, disease management, treatment advances, research and national statistics.
Even though suggestions for ICD-9-CM codes are normally not initiated by patient advocacy organizations, APFED, in keeping with its progressive mission to create awareness of EGID, felt the need to be at the forefront of these requests. Over the last two years, APFED worked with the Centers for Disease Control and Prevention’s Center for National Health Statistics to create unique ICD-9-CM diagnosis codes for EGID.
"Approval of these ICD-9-CM codes will permit accurate classification of these disorders and bring recognition of EGID to a new level", stated Beth Mays, APFED President and Founder.
NCHS has classified the following codes to designate the specific catagories of EGID:
530.13 Eosinophilic Esophagitis
535.7 Eosinophilic Gastritis
558.41 Eosinophilic Gastroenteritis
558.42 Eosinophilic Colitis
Eosinophilic Gastrointestinal Disorders, EGID, are distinct diseases affecting the gastrointestinal tract, which render the patient unable to tolerate food proteins. Recent demographic studies estimate that more than 1:2000 children live with eosinophilic esophagitis, in which only the esophagus, the tube connecting the mouth to stomach, is affected. Statistics on the adult population are currently unknown.
As the medical community becomes more aware of Eosinophilic Disorders, these numbers are expected to rise. Due to the lack of awareness among the medical community and the general public of these disorders, patients may wait 2 to 4 years to obtain an accurate diagnosis and receive proper treatment. More often than not, these disorders are misdiagnosed as other diseases.
Treatments for these disorders include total food elimination, requiring patients to live off an elemental formula which can be taken either orally or via a feeding tube; limited/restricted diets; and/or steroid treatments. There is currently no cure for EGID.
EGIDs are becoming increasingly common, with an incidence similar to household names such as Crohn’s and ulcerative colitis. Due to lack of accurate reporting, the true prevalence is not known, a problem APFED feels the new ICD-9-CM codes will solve. Unique codes are needed in order to allow researchers to track or identify patients with these disorders, develop new treatments, permit accurate reporting of EGIDs, and improve awareness.
APFED, a non-profit 501(c)3 volunteer-run patient advocacy organization, supports patients and families living with eosinophilic disorders.
For more information, please contact Beth Mays at 713-498-8216.
American Partnership for Eosinophilic Disorders (APFED) is a 501c3 non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.
Personal stories of our challenge against eosinophilic esophagitis and how it affects our family and daily lives.
Sunday, July 20, 2008
Friday, July 18, 2008
Jason's Latest Blood Test Results
We have a little bit of an update to report. Three months ago Jason’s blood eosinophils were very high, unexpectedly since he was actually on a more restricted diet than in the past. Today we retested and I made sure we took him on a day that he wasn’t sniffling or sneezing from seasonal allergies. His blood eosinophils were normal! Yay!
He has been managing quite well on his current restricted diet. However, it’s been a year and a half since we last scoped so we’re scheduled to do that on August 19th. The blood eosinophils can’t really tell us how his esophagus is doing. And especially with the reintroduction of wheat back into his diet, even though he seems to be tolerating it fine, we really need to look at the esophagus to be sure. I can’t wait for them to find a better way to monitor this condition. Some kids are scoped every few weeks which is unfortunate, but what else are we to do?
Depending on his scope results we’ll see what our next step forward will be. Though I got to thinking after looking at his medical history notes…. At his last scope in January 2007 his blood eosinophils were normal and his scope was 100% clear, and he was still eating milk and barley. So was the recent removal of those two foods even necessary? What truly caused his blood eosinophil levels to rise since in the past milk and barley weren’t the culprits.
Still many questions to be answered. But we’re doing quite well for now. He’s happy and he’s eating quite a few foods so that’s all good!
He has been managing quite well on his current restricted diet. However, it’s been a year and a half since we last scoped so we’re scheduled to do that on August 19th. The blood eosinophils can’t really tell us how his esophagus is doing. And especially with the reintroduction of wheat back into his diet, even though he seems to be tolerating it fine, we really need to look at the esophagus to be sure. I can’t wait for them to find a better way to monitor this condition. Some kids are scoped every few weeks which is unfortunate, but what else are we to do?
Depending on his scope results we’ll see what our next step forward will be. Though I got to thinking after looking at his medical history notes…. At his last scope in January 2007 his blood eosinophils were normal and his scope was 100% clear, and he was still eating milk and barley. So was the recent removal of those two foods even necessary? What truly caused his blood eosinophil levels to rise since in the past milk and barley weren’t the culprits.
Still many questions to be answered. But we’re doing quite well for now. He’s happy and he’s eating quite a few foods so that’s all good!